It's treading on eggshells to make sure that there to bahaviours
This week, Assembly Members will decide whether to take the first step towards a Bill which could see a published autism strategy in Wales to support the 30,000 people here who live with the condition. Ruth Mosalski reports
ONE person in every 100 in Wales has autism. Matthew is one of them.
Matthew is now 20, and lives with his mum Jill Grange in Bridgend. Like many people with autism, Matthew’s condition is full of contradictions.
Matthew would struggle to walk down a corridor as he’d be overwhelmed by the people and experience but, he’s completely at home on a quad bike or go kart.
Matthew shows many of the complexities of autism which are so hard for people to understand, whether medical professionals, families, or people with autism themselves.
Trystan James is 32. He has a rare genetic disorder, epilepsy and a learning disability. He finds it hard to be in large groups and needs 24/7 care at his Carmarthenshire home.
His mum Marie explains: “Whenever we are able to get out and about, it’s always with an exit plan.”
Marie explains autism as all encompassing. “It affects every second of your day. It’s treading on eggshells to make sure that there are no triggers to behaviours.
Both mums believe a specific law is the only way to help their children and other people with autism.
Next week, Assembly Members will decide whether to take the first step towards the Autism (Wales) Bill.
The Bill will set in law that there has to be a published (and regularly assessed) autism strategy, assessments are carried out regularly, data is collected to plan services and there is sufficient training for professionals like teachers and GPs.
But as it stands, it’s unlikely the Bill will make it past its first hurdle.
Since September, experts have been giving evidence to AMs. During those sessions, experts from the Royal Colleges of Nursing, GPs, paediatrics and child health as well as the Children’s Commissioner have all said legislation is not the answer.
People like Jill and Marie say nothing else has worked and a law is the only resort.
A decade ago Jill wrote her first letter to the National Assembly asking for help. They asked her to join a group working out an Autistic Spectrum Disorder strategy.
The strategy thrashed out was called world-leading. But when it was announced, it wasn’t what they had hoped. “It wasn’t legislation but an action plan, it was watered down,” Jill said.
She has now been involved in autism services in Wales for 16 years and says the services she had to fight for her son to get still aren’t easily accessible.
Marie agrees. Families were “really excited” there would be a strategy. “We felt Wales was leading the way,” she said. “But my son is now 32, and it’s heartbreaking parents of young children face similar difficulties.” So what went wrong?
For Marie it’s simple: “How it has been implemented has been dependant on the people in each health board which means that it hasn’t been consistent across Wales. That’s why we want it to be a statute because without that, nothing is set in stone.”
Over the past months, AMs in Cardiff Bay have been hearing evidence.
Those opposing the Bill say that it is too diagnostic-led, and could take care away from people who need it.
The Welsh Government say it has other schemes to help people with autism and health minister Vaughan Gething doesn’t think separate legislation is needed. In September he published an updated Autistic Spectrum Disorder Strategy delivery plan he said would improve services.
But the National Autistic Society Cymru and Autistic Spectrum Connections Cymru want the legislation.
Conservative Preseli Pembrokeshire AM Paul Davies made autism the subject of his Private Members Bill.
“The purpose of my Bill is so services are put on a statutory footing to make sure that there’s a clear and consistent pathway of the diagnosis of autism, and healthboards and local authorities can plan by collecting appropriate data.”
“The Government has indicated it will introduce integrated autism services which will bring certain measures but I still believe legislation will ensure services will be on a statutory footing and there will be consistency.”
Jane Harris from NAS Cymru told the committee autistic people and family members are having “distressing experiences on a daily basis”.
“More people are saying that they’re waiting too long for diagnosis. More people are saying that they’re not getting the support that they need after diagnosis. And we really need to see a push from Government.”
Some go further. Gareth Morgan from ASCC told the committee that the existing programmes Vaughan Gething praises are too “top down”.
“We have very good relationships with the integrated autism services across south Wales. There are some very talented members of staff, but the job they are being asked to do on the ground is different from what Welsh Government say they are doing.”
ASCC, based in Cardiff, supports 800 adults with ASD.
Mr Morgan told the committee people with autism are unable to access assessment through social services, despite assurances, because they present as though they are coping independently. “Essentially, if that person can get up in the morning and they can wash themselves, they will not get through to an assessment.”
For Jill autism needs to be defined as both a medical or social condition. “We got the medical diagnosis but 18 months later the consultant discharged Matthew from the clinic.” Her feeling was she was being left alone.
Another criticism of the proposed legislation is there are many medical conditions where those with the condition need statutory help. For Mr Davies, the response is simple, he is being lobbied for an Autism Bill.
“By not allowing this Bill to go forward, I think we’ll let thousands and thousands of people down because there’s thousands of people out there who are relying on this Bill”
Jill, who has a background in teaching and nursing, agrees. “I can speak with authority on health conditions. If you have cancer, for example, there’s a pathway that you can follow.
“If you have got a hidden disability like autism, you can’t see the way that person is processing information, there’s no anti-autism medication. It is lifelong, and it affects everything. That’s why this needs legislation. We need to know as we get older our kids are going to be looked after and not locked up in an institution”.
But that’s not a view held by expert groups. The Royal College of General Practitioners says it has concerns the Bill would “lead to diagnosis-based services, instead of services that are needs-based and person-centred”.
The Royal College of Nursing agreed. “There is a strong case that resources and support should be developed and delivered according to the needs of the individual.”
There needs to be better services for people with Autism Spectrum Disorder (ASD), the Welsh NHS Confederation said, but added it did not know if the proposed legislation “would be the most appropriate vehicle to achieve the desired outcomes”.
They also feared that because the symptoms of autism, particularly in children, are common to other conditions, families of individuals would feel the only way they could help would be for an autism diagnosis.
Despite their objections, Mr Davies believes legislation is the only answer.
Plaid Cymru AM Helen Mary Jones sits on the health committee Despite a professional background in children and adults with additional needs, she did not think a law would help. But, her opinion was changed during the evidence she heard.
Ms Jones’ argument is there are too many stories of people who have participated in consultations, debates, reports, and not got anywhere.
The committee could not consensus on the legislation.
What they did agree was there was an “urgent need to improve the provision of support services across Wales.
As it stands, the Bill will not get to its next stage as it doesn’t have Vaughan Gething’s support.
Mr Davies said: “I will be absolutely frustrated and, to be honest, angry, if this piece of legislation isn’t allowed to go forward for further scrutiny.”
If the Bill doesn’t get to its next stage on Wednesday it will just live up to the political will people like Jill have seen for decades. “The politicians don’t give a damn. It probably won’t go through.
Marie agrees: “If it doesn’t go through it will devastate the autism community again. As a mum, it would be bitterly disappointing that other families will have to go through the same difficulties to get basic support.”
The Welsh Government says improvements can be achieved in ways other than legislation.
A spokesman said: “We share the aspirations of the Bill about the need to improve the services available for people with autism and we are working hard with the NHS and other partners and investing £13m to deliver an integrated autism service available throughout Wales. We are also consulting on a statutory code to improve access to care and standards for people with autism and ASD.
“We have been clear from the outset that there are other ways of achieving improvements than legislation, which has the potential to divert resources away from support services people with autism and their families need. These reforms must be given the opportunity to prove their worth, or otherwise, before we move to legislate for change.”
■ For the full version of this article, go to walesonline.co.uk reach
> Jillian Grange, of Bridgend, with son Matthew who has autism
> Marie James and her son Trystan